This story comes from a post written by a fellow blogger who has battled with a very disturbing disorder that I wouldn’t wish on anyone. It is one that runs through both sides of my family, Had a cousin that has died from one and a couple of friends who have them also a friend who had died from one as well.
Believe you me. After many neurologists and different types of medications and the adjustments in dosages, with seizures in between that came in between the changes it is an ongoing battle. The worse balle are the ones that are called Ghost seizres
Seizure Disorder :
When I was about Eight years old playing dodge ball we where called by numbers to come off the line to take place on the field. My number was called, and I didn’t respond until the ball was only close enough to be able to block the ball with my arms from hitting my face. However I wasn’t diagnosed with the disorder at that time. It wasn’t until I was thirteen that I was officially diagnosed with the disorder.
At the time I was diagnosed with what the neurologist call petite mal seizures.Put on medications. These seizures left people who didn’t know me, wondering if everything was ok, because when I had one, I would go about my day as usual, but the look on my face, have a cigarette, ect, however their was a different telltale sign that would say something was wrong.
I told them
1.Yes then this way they are documented for the Social Security board.
2. When i do have to go in they are so bad that if I don’t go in those are the one that can kill a person.
Length and strength of burning or ringing of the left side and ear depended on if I had a grand mal or if it was going to be something that would last a couple seconds. Whether I just needed to lay down or get medical attention. Some say and I have even been asked by emergency personal at the hospital if I go down every time I have an attack.
July, 8 ,2008 I went in for my first Right Temporal Lobectomy at which time the doctors removed two and a half inches of dead tissue which is what was making the disorder.
As the neurologists described it the electricity the moves through the human body that indicates a person to pain, hits the brain was hitting a dead piece of tissue and because of it being dead and having no other place to move onto, it stops abruptly and causes the brain to malfunction causing the attack.
Needless to say even after all the extensive testing a pet imaging MRI’s numerous days in the EMU At the link posted. Same Hospital. Among quite a few of other test it was unsuccessful. July 11. 2008 I was back home doing the same thing I did before I went in for surgery being the same person I was before, taking care of the family, doing every thing I had prior to 7-8. Developing another disorder they 7-21 the doctors diagnosed me with Partial complex seizure, this strange disorder left me with pretty much the same as the petite mal, with a twist a burning feeling the whole left side of my body with a ringing in the left ear. The seriousness of the ringing and length of time as well as the strength of burning.
I had my first Grand Mal which wasn’t to pleasant. It started out with a serious ringing of the left ear, it continued on with a serious burning of the whole burning of the left side, I began looking in my pockets to see if I had a zippo lighter in my pocket, for the liquid leaking , that wasn’t the case so while doing that I also check to see if I had a battery in my pocket with any other metal, that wasn’t the case either. So I laid down on the bed. I went into a Grandmal seizure and ended up in the hospital for three days. From that point on ( Pardon the expression I felt like a female is the only way I could describe it, I would have Grandmal Seizures in the same order, it always happened the third week of the month. So during that time I didn’t go no place. My family knew why. Ever since I was diagnosed I wouldn’t let these grandmal seizures control my life, I would have them deal with them maybe I would be down for a day or two and get back to my normal life. Even after the events started after the first attack except for the third week of the month.
This went on until mid to late 2013 when after a lengthy discussion with my Neurologist about having another surgery. In which case t was another battery of tests starting with A stay at the EMU, MRI, PET scans A test with electrodes put directly on the brain to find the exact spot that was causing the misfiring, or dead tissue explained above. All the areas in red and yellow are areas of misfire. All though there are three the surgeons took out two. Looking at this picture on the right, there is actually two areas one smaller than the other those two are the areas that were removed the other area on the left is still there. Due to the fact that all the action was being caused and started on the left the right side had to be the cause of the disorder. . This procedure was done where they had taken and cut in the same area where they first surgery had taken place and the removal of the plate that was holding the skull together and in place had to be done in order to access the area they had to get to. During this test I was put in a metal mask looked like a cage so I didn’t pull the electrodes out of my skull. My oldest son was also there along with shift changers, students called watchers on twelve hour intervals who would also monitor, the relative was there for the simple reason that they could tell if there was a change that your relative could see before the monitor picked up you and the machine for any change in you and your monitors. I was then diagnosed with a forth kind Ghost seizures. There you have it, four different types of seizures all diagnosed within approximately one year of testing.
After a period of about 2 months on December-15-2015, I went in for my second Right Temporal Lobectomy , This time I went to U OF M in Ann Arbor, This was a little harder for family than the first because it was further away. Don’t get me wrong both surgeries were scary for all involved but I had to try something the disorder was making me depressed, I found myself waiting for the third week of the month, confining myself to the house unable to find work or drive.
Unable to go by myself because of the distance my daughter-in-law went with me this time due to others in the house had their own medical situations. She too had a few problems unbeknownst to me until a few days prior which I would have changed my surgery if needed for the sake of this situation but she pulled through with the strength of Gods’ help. So we bused to Ann Arbor . On December 16, 2015 I had my second Right Temporal Lobectomy after about five hours and a scar that looks like a messed up question
mark , made up of forty six staples,
she was able to call home and let my family know I was OK and was in recovery. By the 18th We were on our way home.
News, Good things comes to those who wait, up until now I am pleased to say that with the Grace of God I haven’t had a seizure since the eighteenth of December 2015.